Skip to content

Informal caregivers are key figures in ALS and PMA care, take care of them!

Informal caregivers are key figures in ALS and PMA care, take care of them! - ALS and PMA caregivers

Status
Active, not recruiting
Phases
Unknown
Study type
Interventional
Source
NL-OMON
Registry ID
NL-OMON46256
Enrollment
280
Registered
2016-06-22
Start date
2017-08-10
Completion date
Unknown
Last updated
2024-04-23

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

distress Emotional functioning

Interventions

The psychosocial support program consists of one face-to-face contact, 6 online guided modules and one telephone contact directly after randomization. The online program entails 6 modules based on A

Sponsors

Universitair Medisch Centrum Utrecht
Lead Sponsor

Eligibility

Age
18 Years to 99 Years

Inclusion criteria

Inclusion criteria: The research population consists of informal caregivers and the ALS and PMA patients they provide care for. In order to be eligible to participate in this study, caregiver-patient dyads must meet all of the following criteria: * The caregiver is the partner of the ALS or PMA patient * The informal caregiver is 18 years or older * The informal caregiver and the patient have access to the Internet * The patient gives the caregiver permission to answer questions which are related to the patient and the disease of the patient. * The caregiver and the patient are able to complete Dutch questionnaires;When patients indicate they do not want to participate in the study, caregivers are allowed to participate without the patient. The inclusion criteria remain in force.

Exclusion criteria

Exclusion criteria: * The caregiver participates in the ALS-CarE study

Design outcomes

Primary

MeasureTime frame
The main study outcome is the emotional functioning of the caregiver assessed with the Hospital Anxiety and Depression Scale.

Secondary

MeasureTime frame
Secondary outcomes are the caregiver burden, caregiver quality of life, quality of life of the patient and emotional functioning of the patient

Countries

Netherlands

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP)